Oliver was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) nine years ago, aged 26. Determined not to let it define him and intent on helping others, Oliver is taking part in the London Marathon on Sunday 26 April. He has even convinced a world-record endurance athlete to run alongside him. Oliver shares his story.
“I refuse to let my condition define me”: Running the London Marathon with FSHD
Living with FSHD has taught me that every step matters. Every single one. When people ask me why I chose to tackle a marathon, the answer is simple: because I refuse to let my condition define what I can and can’t do. I want to show what’s possible when you have the right support, the right training partners, and a cause worth fighting for.
The day I knew something wasn’t right with my muscles
I can clearly remember the day I noticed something was wrong. I was 21 and I had just passed my A Licence for skydiving and was going for my B Licence. I was in the drop zone and as I went to move my right arm up, I couldn’t lift it properly. I proceeded to jump but it just felt wrong. I ended up having to pull my chute early, which was dangerous, but I managed to land safely. That was the last time I skydived.
No one could tell me what was wrong
Despite multiple GP appointments and tests, I got no answers – no one could tell me what was wrong. It took another five years before I was diagnosed with FSHD.
I was in my mid-20s and had moved to Australia to live, when I started experiencing problems again, like Achilles pain and fluid in my knee. A doctor did some genetic tests and discovered I had FSHD.
I had never heard of muscular dystrophy before and had no understanding of what it meant. I was told there was no cure. I was on the other side of the world and felt very alone.
“I remember breaking down in the knowledge that I’d lost the life I had.”
Hope for tomorrow
Back in the UK, over the last few years, I’ve experienced the uncertainty, the gradual changes, but also the constant hope that tomorrow’s research might bring breakthrough treatments.
And that’s why I’m doing this marathon as every pound donated matters. This isn’t about me crossing a finish line after 26.2 miles – although that will be incredible! – it’s about funding research that could change everything. Not just for me, but for everyone else living with a muscle wasting condition.
“This is proving that together we can make a difference that lasts far beyond marathon day.”
My marathon team
Every day I live with the reality of muscular dystrophy and my muscles getting weaker. It can be a struggle and training for the London Marathon has been challenging. But I’m not doing it alone.
My friend Esme will be by my side, having already helped me train to climb Everest Base Camp and running the Lincoln 10k with me last year.
And I’m honoured that British endurance athlete Nick Butter is also joining me. Not only is Nick the first and only person to run a marathon in every country in the world, but he has run over 1,000 marathons and brings a wealth of experience to this journey. His dedication and purpose remind me every day that running can be a powerful force for change. In this case, I’m running for a cure, hoping to raise as much as possible for Muscular Dystrophy UK to help fund research into my condition.
The TCS London Marathon 2026 will be Nick Butter’s 1,108th marathon, but his first time running for Muscular Dystrophy UK. He is taking part as Oliver’s support runner on Sunday 26 April.
“Of all the marathons I’ve run around the world, this one feels particularly meaningful. Oliver’s story is one of quiet strength, resilience, and refusal to be defined by his condition. When he asked me to run alongside him, it was an immediate yes. Not because of the miles, but because of what those miles represent. This is about showing what’s possible, raising awareness, and supporting research that could change lives. I’m proud to be part of his team.”
Nick Butter
World-record endurance athlete
Support Oliver
By supporting the team’s efforts, you’ll be contributing to research and support for people like Oliver living with a muscle wasting condition.
Inspired by this story?
From a 10k to a half, full or ultra marathon – there’s a running event for you. Find out more and sign up to help change the future of muscle wasting conditions.
